A granny's salute to her brave boys

8:38am Friday 5th January 2007

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TWO little boys out with granny for a pizza and a trip to the panto - it's a typical scenario at this time of year, but Ben and Jack Kelly are not ordinary little boys.

Both suffer from myotonic dystrophy, a rare congenital condition for which there is currently no cure, and their grandmother, Sue Kelly, who lives in Martin, treasures every visit the pair are able to make from their home in America.

Research into ways of arresting the development of the disease is ongoing by scientists at Nottingham University, and funding into this vital research has been boosted by £40,000 in the last 18 months, thanks to Mrs Kelly.

She has been helped in her fundraising efforts by her family and friends, and by Rockbourne Fairs, which has donated money in the last two years.

As well as her own efforts, her daughter ran the London Marathon raising £6,000, and her younger son cycled 1,000 miles raising a further £3,000 to help their nephews.

Ben, six, and Jack, eight, both live in America with their father, Mrs Kelly's elder son Jeremy, and mother Erica.

Myotonic dystrophy is a progressive muscle wasting disease accompanied by myotonia, which causes prolonged muscle contractions.

Babies born with it suffer breathing problems at delivery and can be floppy in the early months because of poor muscle tone.

They are also likely to experience swallowing and feeding problems.

Poor concentration, impaired vision, club feet and poor bowel control are all symptomatic of the condition, before the mytonis kicks in as sufferers reach their teenage years.

But early diagnosis is difficult because so few GPs and other medical practitioners are familiar with its collective symptoms, and Mrs Kelly feels it is also vital to raise awareness of the condition, which is inherited.

She said the support she has had from friends and neighbours has been wonderful. "It is simply overwhelming," she added.